mets to lung
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Thanks hoping I get the real thing too! Scans were clear but the lungs and one lymph node in/by lungs. Going today again and hopefully if all goes well will get my first drug trial treatment!Cathy
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Mameme - yes ty got all the scans and answered all the questions and had the 3 required EGC's and bloodwork Tuesday and again today. Started the trial drugs today.... whew been a busy few weeks!Cathy
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LiquidBiopsy Result:
This is intended only for those of you who showed interest.
I was shown a graph that illustrated the number of tumor cells in every milliliter of blood that was collected from me.
I am copying, word for word what I read under "result" on page 1 and page 2.
Page 1:
"Result Interpretation: Result numbers below the reference line indicate that sample tested revealed the quantity of nucleated cytokeratin positive and CD45 negative cells is within the range found in general population. Purity numbers above 10% represent good candidate samples for further analysis, if such analysis is selected. 1.9 target cells per ml were identified in the analysis. Results below 9 cells/ml show greater variation upon repeat analysis and hence are reported as <9 cells/ml."
Page 2:
"Results: No Mutation(s) detected."
So I am being told once again that I have no disease or not enough disease to evaluate so I can use more targeted treatment approaches.
This happened to me before. I was 4 weeks into treatment when I went to the imaging place to get a ct-guided needle biopsy of the numerous tumors in the lining of my left lung. Alas, the tumors were all gone and there was nothing to biopsy.
I know I should be glad that the blood biopsy did not say I had 200 mutations and no known available treatment. But when will I get to know this beast better?
My MO said if (God forbid) I progress again, we shall do another liquid biopsy even before treatment starts.
Thank you for your interest.
Hugs,Brenda
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Wow Brenda! I won't pretend to know all of what that said but I think that is good new!?!Cathy
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Brenda,
Sounds confusing but overall good news. I always have trouble deciphering the medical jargon when I read my scans. Somehow they always sound worse to me than my onc relates. No progression is always a good thing!
Glena
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"No mutations detected" has got to be good, right? Your previous experience with them finding no tumors just before your needle biopsy is an amazing story as well.
So happy for you!
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Thanks, Cathy, Glenna and Susan.
So it looks like the Carbo/Gemzar combo is working very well. Do I keep doing it until it stops working? I don't know. My hemoglobin was dangerously low last week. I had to have my first blood transfusion last Monday. But now I am afraid to stop because it is working so well.
My MO's plan is to move on to monthly faslodex if I show major regression or NED. Do I take that chance?
Brenda
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Good question Brenda, one good thing is if one thing doesn't work as well we can always try what was or what may! I guess we have to trust our MO but keep being a part of our choices. Wishing you continual good results!Cathy
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Thanks, Cathy. My MO says if I show major regression (which is what I think is happening) I move on to faslodex, which has less side effect and not infused, just shot on a monthly basis. If this does not work I will on a different chemo. How's the trial going?
Brenda
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Brenda
Can you ask him why change now if working? Are you doing ok with the s/e's?I am so grateful to be in this trial! I know I am getting the Letrozole (Femara) and if I'm in the lucky 66% I am also getting the palbo. At least I know I'm receiving treatment now. Day 2 I had some nausea and it was persistent for over an hour or so .. so I took a the nausea meds my MO gave me... and it worked. I have been sleeping long and well so that is not a bad s/e! Hope it keeps being this easy but others have said (both in trial and just Letrozole) that it can take awhile to see what s/e's you get and they can come and go.
Cathy
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Cathy,
So happy to hear that you don't have any terrible side effects. I agree that sleeping long and well is not such a bad s/e! Far worse to not be able to sleep, right?
Susan
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Susan - You got that right! I did wake early this morning but did have a good night again. Planning a little trip away with my girlfriend for July 2 so hope all the s/e's are kind in the next while.Cathy
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Brenda, I'm confused - isn't Faslodex a hormone targeted therapy? I seem to remember that you are 3neg? Is it because they can't tell if the nodules in your lungs are 3neg also? Difficult to understand the liquid biopsy results, but I'm so happy that once again the Carbo-Gemzar is working for you!
Tryn2, so great you've started treatment and I hope you are in the 66% group and that it will kick some cancer butt (but not your butt!)
Am going along fine, at the end of 10 cycles of Xeloda almost. Feeling pretty ok, all in all. Scan on the 30th - so then we'll see what's what.
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Thanks Carolben and gl on the 30th!Cathy
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Cathy, the Carboplatin/Gemzar combo seems to be my magic potion, but I can't be on it forever. I had to get a blood transfusion last Monday because my hemoglobin was life-threateningly low!!! Plus the blood counts always go down and I have a hard time keeping up. I don't feel bad, though. I think I am very tolerant of the s/e's, i.e. light headedness, rashes that come and go, no appetite. I am happy to hear that your side effects are not so awful.
Carolben, my last tissue biopsy was from an enlarged lymph node. I insisted to have it checked. It was 50% ER+!!! I still do not know receptors the lung tumors have. I am almost sure they are TN because of the way they respond to the Carboplatin. So yeah, I'm living proof that mets can morph and change hormone receptors. I am keeping my fingers crossed for you. Here's to Xeloda being your magic potion and hoping for major regression or at the very least, stabilization!!!
Hugs,
Brenda
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Brenda I'm glad you have a magic potion and you don't feel bad! Still doing ok as far as side effects on this drug trial. Hope it continues.Cathy
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Hi everybody! I haven't posted in a few weeks but try to check in every now and then to see how everybody's doing. I've moved into my maintenance phase now and have had two rounds of Herceptin and Perjeta so far. Happy to say I've had no side effects so far to speak of. I still have a lot of fatigue an shortness of breath, but I try to be thankful that I'm better off now than I was before. At least now I can do stuff around the house, and I've gotten out to do some fun things a few times. Even took my son to Six Flags one day with some friends. (Rented one of those electric carts -- never would have lasted without it!) I felt like such a shut-in for so long, it's been good to get back out in the world for a change.
Had a little bit of good news at my appointment yesterday. My tumor marker number was back down to 38.
I think they're happy with anything below 40. The last two had been 55 and 48. I think I'll be having another PET scan in July, so hoping for more good results to share then.
Keeping you all in my thoughts and prayers.
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Carol.. nice to hear your doing some better and enjoying life. Even better news your markers were lower!Cathy
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Carolsue, thanks for sharing your good news. It must feel good to be in the "maintenance phase", as you put it. Wishing you continued good days.
Brenda
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yeah, carol, love hearing your good news! Glad you were able to enjoy six flags, too!
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Carol,
So happy to hear that you are side effect free and able to get out! Also good news about your tumor markers coming down. Sending positive energy your way that your next scan will have even better news!
Hugs, Susan
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Oh well, back to basics again - scan shows progression of existing mets in lungs plus "numerous new nodules visible". So it's goodby Xeloda for me, hello Gemzar/Cisplatin. Damn, I've been feeling so well lately that I thought they'd find NED, (bit optimistic, I guess)!!
Brenda you are on Gemzar/Carboplatin aren't you? Did you loose your hair? I'm doing an infusion a week for 2 weeks then 1 week off. I hope to get good results as you did. There is an enlarged hilar lymph node, which they want to watch - not sure exactly still what that signifies. The cancer has already been in my blood and lymph systems, to get to the lungs.
Had an ultrasound of liver, pancreas etc and all is clear there,thank God; waiting for results from bone scan.
After being on Xeloda and keeping my hair, it feels like I'm going back to 'serious' chemo again now - that's strange, but I guess it's the sitting and getting the infusion at the oncology unit, loosing hair etc - it's so obvious to everyone, whereas with hair people don't know you're on chemo. Oh well, it could be worse, I'm still feeling well, so am determined to enjoy each day of feeling like that!
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Carolben, I only lost a little bit of hair, then it grew back while on treatment. Not all people lose hair with this combo. I think you will finally zap those nasty lung mets with your new treatment. Your attitude is a big, big plus!!!
Brenda
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Carolben,
In my initial PET/CT scan I had "Extensive confluent mediastinal and hilar lymphadenopathy" but two months later it said "Interval resolution of FDG avid mediastinal and hilar lymph nodes". In other words, the problem went away. The way I look at it is that my lymph nodes were working hard to combat my many metastatic sites (brain, eye, breast, lung) of which I wasn't even aware. Once I started treatment, lifestyle changes, etc. my tumors started to shrink and become less active and my lymph nodes no longer needed to work as hard. I think of lymph node enlargement as more of a red flag that something is going wrong somewhere than a problem with the node itself. Perhaps the more medical knowledgeable can pipe in.
Glad you are feeling well. That is the most important. That's what I try to focus on. Like someone posted, "I look fine on the outside but on paper I look like hell". I always say, "I feel fine but on paper I look like hell".
Hugs, Susan
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Well I knew it wasn't gong to be bood news when the oncologist called late last week to say he needed to see me right away this week. Turns out the new blood test and scan showed more pregression and it is now confirmed in my liver and lung. So he wanted to switch me right away to do chemo and do a biopsey of the liver as my liver numbers are terrible and the CT confirmed it was in my liver. I'm all for throwing at whatever needs to be done to try and stop progression. My oncologist just wanted me to know how serious this is but I'm not throwing in the towel just yest. I had a really crappy week last week and just started feeling human in the last two days. What are people's thought on juicing? I know some think you are just fueling the cancer and now that he confirmed it has spread rapidly I'm wondering if I'm doing just that. I come here to get my boost I need to keep thinking positive
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Hi Ladies - sorry to hear of some progression here. Not sure about the juicing. I was told I should try it from a lady I know who also has had bc. I am day 14 on the palbo drug trial and go in for my first blood work and see MO tomorrow. My lymph node near left lung was noted swollen a couple months ago too and my MO said it was noted in the latest scan. I will try to remember to ask him about it tomorrow. Hoping your right SusaninSF and it is just holding the river from overflow and will go away too! Wish you all find what works and with few side effects. The worst one for me is the lack of appetite. I force myself to eat but still better than the chemo was!Cathy
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Roberta, I have a Nutri-Bullet and I'm so used to juicing with it that I miss it when I skip a day. 50% kale or other green vegetable and 50% fruit. I don't know if it keeps the cancer stable, but it helps me get "regular" in the digestive department. Sorry about your latest development. Your BC was in remission all those years, it must be very disappointing to have it come back. The good news is there is so much you can do to treat metastatic disease nowadays. There's more in your particular arsenal if your BC is still hormone positive.
I guess our oncologists do not worry too much about lymph node involvement if we already have the mets. It's like worrying about stage 3 when stage 4 is waiting to get attention.
Cathy, I had no appetite right after my stage 4 diagnosis. I had fear of imminent death and anger at the injustice of it all. Then chemo and flu like symptoms. My onc prescribed "Megace" in syrup form. It gave me back my appetite. It's also supposed to help ER+ breast cancers.
Brenda
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Roberta,
So sorry to hear about your progression. Definitely don't throw in the towel yet. I'm in a group of MBC women in my city and some of the women have been living with MBC for a long time, one woman for 15 years! Many have come back from very dire situations to live almost normal lives. Have you read the book "Radical Remission"? That book really inspired me. It's available on Kindle.
Hugs, Susan
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alert ... Name change. Finally took the advice of other members and took my real name off. Since I'm a gator fan (having graduated from UF) I am now GatorGal.
Sorry to hear of progression ... Hoping new meds will do the trick. I am on carbo now and still have a full head of hair. Also did gemzar and did not lose my hair. I lost it on taxotere but not since then and have been in quite a few chemos in the last 4 years. We just have to keep looking for that magic bullet!!
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thanks all, and your explanations of the lymph nodes is very helpful! Just another thing to watch!
Sorry you are back here, Roberta! I sometimes juice, mainly when I'm not eating fruit or enough veggies, but on the whole I just try to get a variety of food into me. My appetite is also not great, tho I do get days when I'm suddenly hungry. It's like my body wants to make up for eating less, that way I manage to stay at more or less the same weight too. I can't get crazy about feeling I have to eat this or that specifically, I follow my body's messages, & when it calls out for red meat or whatever, I eat that. But I'm not one to talk, my eating habits have never been very good, even tho Im not a junk food fan at all, & like "healthy" food, I'm just an 'erratic eater'.
Have heard of the Nutribullet, Brenda, it must be better as you get to keep the fibre, as opposed to juicing. I think attitude does have a lot to do with quality of life. If I feel positive, even tho what they say is not so positive, then my reality right now is good. And so the qol is good, maybe it's living a bit in denial, or never never land, but it does no harm. We are all amazing women facing probably one of the greatest challenges in life - living with a stage iv disease. It's not for sissies!! Thanks for the reassuring words re Gemzar/Cusplatin, it always helps to hear from someone who's done the same chemo! I can't handle thin or patchy hair, I'll probably shave it then & maybe it'll grow back during the rest of the treatment. I'm also hoping this combo will kick some serious butt!
Cathy, how did your appointment with your MO go? Hope you got good news!
Susan, Love what you say about looking like hell on paper, but feeling fine - so true! Thanks for a very clear and positive explanation of the lymph nodes. I don't like not understanding things, & you cleared that up! I'm in awe of you living with extensive mets and still being so positive! Are you on any chemo now, after your rads?
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